Just twenty years ago, thousands of people with learning disabilities were living in NHS hospitals. Segregated from society, the long-stay residents were incarcerated in these institutions, many of which had begun life as the asylums of Victorian England.
Since the introduction of “care in the community” which triggered the closure of these institutions and the creation of the learning disability charity Brandon Trust and other organisations, there are now an estimated 1.5m people with learning disabilities living with their families, in private rented housing, social housing or small supported housing schemes in communities across the UK.
This represents huge progress. But it’s not enough. Some 2,600 people with learning disabilities remain in long-stay state-funded Assessment and Treatment facilities. What’s more, the reality for many of those now living in the community remains a lack of connectedness to the very communities in which they live.
At Brandon Trust, we commissioned new research to explore to what extent people with learning disabilities are truly “integrated” into their communities. The results, published as part of our 20th anniversary report Finding Freedom out tomorrow confirm what the social care sector is often afraid to admit – that people with learning disabilities are largely invisible in our society.
According to the research, more than half the population do not know anyone with a learning disability. Of those who do, the most common reason (32 per cent) was because they are a neighbour suggesting that any relationship is accidental rather than because they share some activity or interest in common. Most shockingly, of those people who do know someone, 24 per cent see them less than once a year. On a more positive note, 91 per cent of the public asked say this group of people should have more opportunities to build relationships in the community.
When people with learning disabilities not only live in a community but are truly connected to it, through their interests, friendships and by building their independence, the results are extraordinary.
Take Jade, who two years ago spent most of her time alone in her room in a supported housing scheme and described herself as “down all the time”. She now enjoys a packed social diary that includes everything from singing in a community choir to eating out with friends in town. She takes the bus on her own, which she thought she could never do, and has even developed a love of tree climbing thanks to a new volunteering role.
But her experience is the exception, not the rule. Scratch under the surface of “care in the community” and the reality for most people with a learning – despite the fact they live in a town, village or – is “care without the community”. Instead of encouraging independence and social or economic integration, support often simply perpetuates an individual’s dependence on health or social care organisations.
Paid-for care cannot replace friendships or real community connections. People with learning disabilities need relationships, hobbies, jobs and education. Care providers have to be braver in order to facilitate this, relinquishing control of their traditional role as care givers and acting instead as community connectors. This is a cultural issue for the care sector. It demands leaders set the tone, alter their organisation’s ethos and reassure their workforce about the benefits of change. Risk is not a reason to deny people choice and freedom.
Commissioners too need to be less risk averse and to recognise the merits of supporting people to do the things they can do, increasing their independence and ultimately reducing their need for paid for support. The focus should be on what people with learning disabilities can offer, rather than what they need. Success therefore should be judged on how much less help – and funding – people with learning disabilities need.
Lastly, government needs to do more to champion the social care workforce, promoting recruitment, retention and leadership in social care as it has done with the education sector.
In a world where we face a crisis of rising social care costs with the aging population, integration is the key not only to a better life for people with learning disabilities but also to ensuring maximum impact from the increasingly stretched burden on the taxpayer to provide care.
Lucy Hurst-Brown is chief executive of UK learning disability charity Brandon Trust
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